Thursday, December 29, 2016

What Life Looks Like

Happy 39 weeks (gestation) to our bubba!

We have loved you for 97 days. We were scheduled to have a c-section yesterday but instead, my body forced you to come months early. No, you weren't ready, but you have made the most amazing strides. You are the strongest person that I know! Although your due date is 1 week away, we still have no idea when we'll get to bring you home. But once you are home, I refuse to kiss you any less than 1,000 times per day. I love you more than I could EVER love another little boy. Bennett, you are more than I ever knew I wanted.

To celebrate this awesome milestone (which quite frankly felt like we would never reach), I want to share the most special pictures with you. Thanks to the heart of another mama, we were given the gift of photos. Jennifer reached out and kindly offered to give us a free photo session documenting a teeny tiny piece of what NICU life looks like for us. Not pictured are the heartbreaking emotions that we sometimes feel while being NICU parents. BUT, pictured, you'll find the joyful part of the experience. I am so thankful that Jennifer captured these moments because I will F O R E V E R cherish them. I can't wait to share these amazing pictures with Bennett.

Despite this being such a difficult season, I have never felt more blessed in my 29 years of life.

Thank you all for cheering us on, and letting us share this intimate piece of life with you. The photos were taken when Bennett was 2.5 months old, and he is now almost 3.5 months old!

Tuesday, December 20, 2016

Yesterday's Mountain + Another Bennett Update

As if I don't already feel guilty enough for Bennett's early arrival, I continue to feel guilty each and every day for various things. One thing that I feel guilty about is the fact that I've had to act out of character (for example: speaking up when I normally wouldn't) for the past 88 days, but it's always in the best interest of Bennett. I feel guilt about being someone who I am fundamentally *not* because it feels strange.

I spent a good chunk of yesterday crying. Part of my crying episode was in the Charge Nurse's office. Honestly - God bless them for putting up with me. Even if they didn't care for me because of my outspoken nature over the past 3 months (I have no idea how they feel about me), they put up with me and they even go so far as to hug me when I need it the most. Yes, I do feel guilty about throwing a fit and complaining... but it ONLY comes from a place of genuine concern. I am a flawed, YES, but it's my child that we're talking about. I will act out of character if it means speaking up for the wishes that I have for my son's care. 

How to best explain yesterday: if I drew a picture of a mountain, that would be what my day looked like. Started out at "baseline" and slowly increased into a super excited, happy day. We had Christmas at my mom's house, and watching Kens open presents was so fun for me. Then, things got even more exciting whenever we got to the hospital to see our son. They gave us big news - which I'll share in a minute. That was the peak of the mountain. I asked the nurse, "this is a good thing, right?" And she said, "yes, this is a very good thing!" 

After our good news, accompanied by successfully breastfeeding Bennett, I told hubby he could pick up Kens and head home to get her down for bed. I stayed at the hospital. Things slowly went downhill and I ended the day very upset (hence the beginning of this post). I won't go into detail about how things played out, because I don't want it to seem like I'm bad mouthing anyone. I'm not! It's just that things played out much more differently than I expected. Thankfully, the nurses assured me that I'm not the first person to be "shocked" (think culture shock) by the new environment. I'll talk about the new environment in the next paragraph. Honestly, I blame part of my emotional breakdowns on the lack of sleep. I usually get two naps overnight. My naps usually last 2-3 hours at a time. So, essentially I get 4-6 hours of (interrupted) sleep per night. While at the hospital yesterday, I FELL ASLEEP IN THE CHAIR. For like 30 minutes. That is also extremely out of my character. I've always been a light sleeper, but not these days. 

Anyways, the new environment is our good news! And it IS good news even though Monday ended with some uncertainty. Our new environment is the Continued Care Nursery. This new room is specifically for "feeder and grower" babies who are closer to discharge. We're still in the NICU; it's just a different room. Now, there's really NO telling when Bennett will be discharged. I know that it definitely won't be before Christmas. Maybe, Lord Willing, it will be by New Years. His due date is January 5th, so even if it's around his Due Date, I'm okay with that. We won't have our primary nurse anymore, which is heartbreaking, because she is like family! But the Charge Nurse put my fears at ease and assured me that Bennett would still receive excellent care! 

But you guys. This really is great news. We are 38 weeks adjusted this week and we're SO CLOSE TO GOING HOME. It could be just a matter of weeks now. 

I am on pins and needles to get baby boy home. I have washed all of Bennett's clothes, his crib sheet (even though, let's be honest, I will probably hold him 24/7), picked out his going home outfit (thanks Linzy!) and day dreamed about our BORING but united days at home.

A few Bennett updates include:

1) Our angel is 6 proud pounds. I am sincerely so impressed by his hard work!

2) Apparently Bennett was diagnosed with Chronic Lung Disease. I really can't tell you too much about this, because I don't know much about it. From what I understand, babies can outgrow it and he was given that diagnosis because of his prematurity and need for oxygen.

3) Speaking of his breathing, Bennett is doing REALLY GOOD. He stays on room air (21%) at 1 liter of flow, and consistently has good saturations. I believe he will be weaned down on his liter flow sometime this week. Please be in prayer for him!

4) Regarding Bennett's feeds, he gets 45mL every three hours. He is on half breastmilk and half formula. The purpose of the half & half is to reduce the amount of fluids that he's getting, yet to increase the amount of calories he's on (see: they want to make him gain weight on a smaller feed size). Read the next update below to understand why they don't want to increase his fluids. Also regarding his feed, he usually takes half a bottle at a time. The rest has to be gavaged into his NG tube. He has taken a full bottle a couple of times. We are still working on our stamina! I have breastfed a couple times, and that is going great! But I still am not totally sure if I want to jump on the breastfeeding wagon. I think I've finally gotten into the pumping groove and I may stick strictly with that.

5) Poor baby Bennett has Thrush (from some frozen milk he was given of mine, while I had Thrush), so he gets Nystatin a few times per shift. Bennett is also on a diuretic to help keep excessive fluids out of his little body, which helps him in many areas as he grows and learns! The diuretic is why he's on half formula & half breastmilk.

6) In thinking futuristically, we will be having a Sip N See for everyone to meet baby Bennett around March or April. Bennett will be 6 months old in March (but you can think of him as a 2 month old) so I figure he will be bigger and stronger then. I may push the Sip N See off until April since that's when flu/RSV season typically ends. We were blessed with hand-me-downs while Kensie Grace was little (thanks to our old neighbor and great friend, Meghann) but now we need some things for Bubba. When Bennett comes home, we plan to buy the necessities, but if you had a desire to gift something, our registry is online HERE. This comment is not a plead for gifts, but rather just making it public instead of messaging everyone the link who asks for it! We also appreciate sweet cards, hugs, food, and more than anything: prayers.

7) Bonus update: Bennett met Santa and no tears were shed ;-) HOW PERFECT IS BUBBA??? Thanks to our amazing NICU for making sure we still get to appropriately celebrate holidays. Can you believe we've spent Halloween, Thanksgiving, and now Christmas in the NICU? Let's get baby Bennett home before New Years so we don't have to add that to our list!

To make things very uncomplicated, we just ask for prayers that Bennett would have complete health, learn to breathe on his own, and learn to eat on his own
Last - thank you to everyone for supporting us emotionally. I am still working on things. The hardest part is letting go of my biological desire to care for my son 100% and having to entrust his care into strangers. There are no words to explain the stabbing pain in my heart each time I walk away from Bennett's bedside. If you have an extra prayer to give away, I would love prayers for my broken heart. I fall deeper in love with Bennett every minute that passes, and each day is harder than the last to leave him in the hospital. Love you all!

Friday, December 2, 2016

Happy December + Bennett is 35 Weeks Corrected!

**Please note: I wrote this post on 12/1/16, but now that it's after midnight, it's going to show it was published a day later.**

I can't believe that my little boy is 35 weeks old corrected today (meaning that if he were still in my belly, I'd be 35 weeks pregnant; but as you know, he came 10 weeks ago and we're still 5 weeks from our due date). I am so thankful to finally be in December because, LORD WILLING, we will be bringing Bennett home sometime this month. Finally. The doctors are hopeful that he'll be home by Christmas, however no one can truly say. They think he'll need another good 4 weeks in the NICU, and Christmas is 3 weeks away, so who knows. My heart is telling me that it may be just a little bit after Christmas; maybe we can aim to have Bennett home by New Years Eve. Ultimately, Bennett has to work really hard to figure out how to breathe on his own and eat on his own. More on that in a minute.
Look, I totally get it: people have had *way* longer stays in the NICU than we've had, or are projected to have. Sixty-nine days down, and _(?)_ days to go. But I don't think you can really compare baby to baby; our journey is unique to Bennett Jimmie. There isn't another Bennett. Speaking of comparing, until today, I was 100% oblivious to other babies nearby. I hadn't even given those other precious souls a thought. Somehow, something shifted in me; maybe the monotony of it all. My tunnel vision wasn't as tight and I began to see the larger picture around me.

How is it possible that people can come and go so gosh darn quickly in the NICU while we're still hanging tight? I mean, there was literally one baby at the bedside next to us, then they were gone. The very next day the same thing happened. I was so confused. Did I miss something?

Reality set in and I came to the understanding that my baby boy has a different purpose than their baby. And their baby has a different purpose than the cutie clear across the room. There really is no comparison. The Lord is going to use each baby in the NICU for His glory and I just have to take a sip of that realization without letting the jealousy take over. Yes, I said it. Jealousy. I was feeling jealous and even started crying right there on the spot in my Kangaroo chair while holding Bennett.

It was weird to be hit with jealousy all of a sudden because I wasn't expecting to feel that way. Maybe it was the loud, full-term-sounding baby cry that set me off. Or the fact that I'm running on 4 hours of sleep (rather, "naps") per night and am irritable. Or maybe it's because the enemy knows I'm an easy target. Either way, I felt jealous for the first time in 69 days. No one could've prepared me for the plethora of emotions I would feel while being a NICU mama.

And you know what else I wasn't prepared for? How hard feeding would be. Complete honesty here: I just assumed breathing would be the hardest thing for Bennett. And while he's not 100% on his own, he's very slowly learning more each day. Feeding, on the other hand, is a struggle. Apparently it's all very normal, but I get a little discouraged. The feeding isn't all on him; it's on me too. I have to learn his cues.

It's all very sad that he has to work double just to do something most full-term babies know quite well. When we had Kensington, the thought of, "will she know how to eat" never occurred to me. And for Bennett, he is trying SO hard, and the question of, "will he learn how to eat today?" crosses my mind.

One thing that I've realized is that I am getting to see the beauty in two sides to nearly everything about our kids. One kid was an (obviously medicated) c-section while the other was an unmedicated natural delivery. One kid was born 4 days early, and the other was born 4 months early. One kid was formula fed, and the other kid was breastfed. I could go on and on. I guess the point that I'm making is that I have perspective. A new perspective that I certainly couldn't have understood until this point.

I have good days and bad days (still). Honestly, most days are good days; really good days because of the MIRACULOUS progress Bennett has made. But other days are harder and I resort to buying a cake for my Pity Party of 1. Not literally, but you get the point.

Here's where I'm at: we're on our last lap but I was tired like 3 laps ago. Essentially, I am tired of 1) asking for help, 2) driving 2 hours per day, and 3) worrying sick about my baby boy continually. I need, now more than ever, for others to be patient, supportive and encouraging. Oh and I need others not to expect too much of me right now, because they will be highly disappointed. I am being very selfish with my time, and I'm not willing to give any extra 5 minutes away.

Last thing: you can see by my public Facebook posts & photos of Bennett how happy I've been lately; his progress makes it easy to be happy and hopeful. However, the reality is that I'm not always "good". Please don't take this blog post as a complaint or being a Debbie Downer, because that's not what it is. This blog post is just to show that my emotions fluctuate often (according to my OB and other medical professionals that I've talked to, what I'm describing is very normal for being in our situation), but I'm still holding tight to the promise that Christ gave me.

And now, this guy, because CUTE.